Celebrations of the Sweet, the Sorrowful and the Scary Times in Life

Much like the hero of J.M. Barrie’s beloved children’s tale “Peter Pan”, he flew into my life and I was forever changed.

As if one first name wasn’t significant enough to describe him, John David Keith boasted three. Even in his late teens, he was already a mountain of a man – larger than life and imposing of stature, but beneath all of the muscle and tough exterior lay the little known soul of a poet. In true Peter Pan fashion, he chose me as his Wendy. Every experience with him was an adventure, and danger seemed to lurk at every turn. I was hopelessly drawn into his world – enamored by its exciting divergence from the quiet, controlled and steady life I’d been leading with my feet firmly planted on the ground.

I floated above the clouds with him for years, until time and circumstance slowly wore away at what we had. I found myself growing weary of the relentless tug-of-war between my family and his world, the constant vying of attention from a never-ending cycle of mermaids, and the perpetual presence of his ever-true band of Lost Boys keeping him hopelessly tethered to Neverland. As I traded the soft pink floral paper that covered the walls of my childhood bedroom for the solid concrete walls of a college dorm, I knew I faced a new kind of future. It was time to put away childish dreams. Fearing he might actually be the boy who never grew up, I made the difficult decision to return to a quiet, controlled, steady life. Rather than rage against my choice – prepared to do battle to the death – out of love, he flew silently up and out of my life.

I’ve thought of him often over the years – like a shadow trapped in a dresser drawer. As I went on to happily wed and work, I dreamed he did the same. As I filled the rooms of my home with the sweet laughter of children, I prayed he was experiencing the same kind of joy. I never forgot the name he and I had once chosen for what we dreamed would be our first son – Joshua Skye – and found it somewhat prophetic that I would never give birth to the boy I yearned for. On that fateful night in 1989, with just a handful of words – I had completely changed the course of my destiny.

On October 14, 2008, I learned the sad truth about John’s destiny. He had not married a pretty little wife, was not living in a sweet little house encircled by a white picket fence, and the halls of his home did not ring with the laughter of children. He had found happiness working as a PGA golf professional at golf clubs throughout the Southeast – able to channel that athletic prowess I remembered so well from our high school football field into a career he truly loved. Unfortunately, after falling down inexplicably on the golf course several times and a laundry list of other strange mishaps, John David Keith was eventually diagnosed with Amyotrophic Lateral Sclerosis (ALS).

Also known as Lou Gehrig’s Disease, ALS is a devastatingly progressive and degenerative disease that affects nerve cells in the brain and spinal column. Over time, the brain’s ability to initiate and control muscle function deteriorates to the point of complete paralysis. There is no known cure. Over the course of the last three years, John has lost the ability to walk, can no longer speak, and finds himself struggling to breathe without the aid of a machine. The once strong and muscular physique of an athlete has been slowly transformed into a frail skeletal frame. As his condition worsens, the bills for caregivers, medical supplies, and doctor visits continue to mount. As if watching the rapid decline of her beloved only son isn’t difficult enough, the financial burden has become overwhelming for John’s widowed mother, Renee – his stalwart, brave, and ever-present Tinkerbell.

Shortly after learning his fate, John reached out to me to let me know. My heart was broken in places I didn’t think even existed any longer. The tears didn’t stop flowing for two straight days even though we had not communicated or laid eyes on one another for two decades. That’s what love is. My poor, sweet husband has been patient and understanding, because well… that’s what love is, too. While he could still communicate – John told me to cherish what I have and to never take the simple things for granted – all of the things he could no longer do or have. It’s a painful and poignant lesson to learn.

In just a handful of hours, I will see John for the first time in 22 years. I’ve been told to prepare myself, and do my best not to cry. The setting will be a charity golf tournament in Cumming, Georgia at one of John’s former places of employ, Polo Golf & Country Club on August 29. There – surrounded by friends, family, and well-wishers – John will commemorate his 44th birthday, a day he never believed he’d see. I am so grateful for the opportunity to share in this bittersweet celebration of a very special young man and his mom.

Knowing what I know now, I find a tragic irony in the way I have always compared John to Peter Pan. In his final stages of this horrible disease – at the tender age of just 44 – it’s true that he will never have the chance to grow up. He will never utter the words “I do”, he will never hold his newborn baby in his arms, he will never grow old with someone he loves. When all is said and done, he will simply fly on to that second star to the right and straight on ‘til morning. And – like Wendy – I will never stop searching the stars for the slightest sign of him.